Sunday, October 7, 2012

Down syndrome, Coping and Caregiver Stress (31 for 21, Day 7)

I've touched on this topic before, during the last 31 for 21 Challenge. Entitled "Be Gentle" I outlined the means to deal with family stressors a little more proactively and more successfully. As I said at the time, I have not mastered all of the points listed there; however I can say that I employ many of them in my day to day life and I find them very helpful.

Parts of my life have been stressful and (so far) raising a special needs child has been slightly more stressful than raising my other two typical children. I also know that what creates stress for me, may not do the same for my husband and vice versa. This raised a few questions and naturally, I went looking for a few studies to see what other people were experiencing.

From the studies I looked at, there were the following conclusions:

Stress levels were lower in the families with Down syndrome (compared to Williams, Fragile X and Prader-Willi syndromes)

Stress levels were lower in families with Down syndrome, compared to families with autism

Although mothers of children with autism scored higher stress levels than fathers of children with autism, no differences were seen in the stress levels of parents of children with Down syndrome and parents of typically developing children

Family stress levels were related to the child's characteristics and the parent's perceived levels of control.

Parents who experienced high stress or low stress used different behavioural themes to describe their stress

Family resiliency is associated with positive appraisal, amount of resources and coping/problem solving skills.

Hope, in the face of uncertainty is important in order to adapt

Caregivers often struggle with hope, especially when faced with reaching goals for their child

Outlook directly relates to the coping mechanisms that are employed. Those that ruminate and blame themselves generally have depressive symptoms while those that employ positive reappraisal have positive outlooks and feel less stressed.

Parents with both typical children and children with Down syndrome felt that:

they had more care giving difficulties

more child-related stress, such as distractibility, demandingness, nonacceptance

more parent related stress, such as feelings of incompetence, depression, role-restriction and health problems.

more partner related stress, related to both mother and father's stress levels.

Mothers:

felt their stress was related to caregiving difficulties with their children

who had primary childcare responsibilities reported more difficulties with health, role restriction and spousal support.

Fathers:

felt their stress was more related to their child's perceived status (Down syndrome vs typical)

who had primary childcare responsibilities reported fewer difficulties with attachment and parental compliance.

Truly, these points simply illustrate with I've suspected all along; your coping is unique to you, however the methods you employ will determine how successful you are at relieving stress.

To be honest, I feel guilty sometimes because my son does not stress me out all that much. How others see him and making sure that he gets to all of his appointments tends to stress me out more. It's nice to see the data backs me up; that will certainly assist in helping me re-frame and reappraise any hiccups that come our way.

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Dabrowska, A., and E. Pisula. "Parenting Stress and Coping Styles in
Mothers and Fathers of Pre-school Children with Autism and Down
Syndrome." Journal of Intellectual Disability Research 54.3 (2010): 266-80. Print.

Lanfranchi, S., and R. Vianello. "Stress, Locus of Control, and Family
Cohesion and Adaptability in Parents of Children with Down, Williams,
Fragile X, and Prader-Willi Syndromes." American Journal of Intellectual and Developmental Disabilities 117.2 (2012): 207-24. Print.

Roach, M. A., Orsmond,G. I. and Barratt, M. S. . "Mothers and Fathers of
Children with Down Syndrome: Parental Stress and Involvement in
Childcare." American Journal of Mental Retardation 104.5 (1999): 422-36. Print.

Truitt, M., B. Biesecker, G. Capone, T. Bailey, and L. Erby. "The Role
of Hope in Adaptation to Uncertainty: The Experience of Caregivers of
Children with Down Syndrome." Patient Education and Counselling 87.2 (2012): 233-38. Print.

3 comments
:

I don't think there's anything that stresses me about Babe's Ds other than how the world will perceive and include her. Or, it doesn't as much stress me as it makes me confrontational and, apparently, scary. Frankly, I don't know which will provide a better outcome, me being stressed or me scaring the shit out of my fellow men (I do have those horns you know, so there's that...)

Very interesting article about caregiver stress among the developmentally disabled population. I continue to look for ways to reduce this type of stress and appreciate the resources you identify here.Nancy Greennancygreen670@gmail.com

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"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

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"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

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"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna